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      Depression, Mental Health and Crisis Support   06/04/2017

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jlp

Diagnosed with ODD

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jlp   

I've posted a number of times about ds#2 (5) and his frequent exclusions from school lately.

 

This week he was diagnosed with Oppositional Defiance Disorder and also keeps his Pathological Demand Avoidance diagnosis.

 

I'm not happy at all with this diagnosis. I can understand ASD but to me there is absolutely no reason why ds#2 would develop ODD, what I've read assumes many of these children come from very difficult backgrounds, which ds#2 certainly does not. I know this isn't the case for every child with ODD.

 

The other issue worrying me is the suggested approach to ODD is very basic parenting - parenting courses, praising the good, ignoring the bad which we do anyway. I actually find these suggestions insulting.

 

And apparently there's nothing out there for children with ODD, no services to be accessed. No support, nothing.

 

Our consultant feels that in time ds#2 will be diagnosed with ASD eventually, what stopped him being diagnosed at this point was his good eye contact and how he will check the adult is watching him before he does something 'naughty', he also is very social.

 

I was wondering what is the basic (clinical) difference between an ASD diagnosis and ODD - I know ASD is the brain simply being wired differently, is ODD a condition a child develops and their brain are actually perfectly 'normal', it's the basic difference and cause that I don't seem to understand. Is ODD actually less 'serious' than ASD? Ds#2 is much harder to deal with than ds#1.

 

I'm not explaining myself very well, nor am I convinced that ds#2 does actually have ODD - tbh I'm pretty upset - but any comments are welcome.

 

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JsMum   

 

 

 

I personly dont agree with the ODD label and I feel it is a clause for Health/social/education services to opt out of providing vital provisions and services.

 

Like you have already explained too, it points the finger wholey on the parent, the suggestive research is that the behaviour is indeed learnt and comes from a background of generations of Alcohol abuse, Criminal records, loonnngg term mental health and that basically the parents dont know what there doing.

 

I am first to put my hand up to admit I did struggle with J, but then his behaviour was challenging and needs certain management.

 

There is no help, no support and no real programmes to request.

 

I feel that Js difficult challenging behaviours are to mask his great anxiety and fears.

 

The ODD is the forefront, the deeper levels are anxiety.

 

 

I personally do not share J has ODD any more, it is pure suggestive to others that he is in full control of his behaviour, and in sensory overload that is not the case.

 

I would concentrate on Sensory Intregration Disorder and Autistic Spectrum Disorder and look at stratagies and behaviour programmes that suit children with a developmental disorder.

 

Also look into Anxiety Management and how to help him cope with the physical reactions to Anxiety.

 

I have technocally left this site, but feel that your post was a very close bug of mine.

 

Lack of treatments, lack of access, and lack of understanding can make a child behave and look a lot like ODD but have definate underlying undaignosed developmental disorders/conditions.

 

JsMum

 

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I really feel for you and have just managed to loose a lot of my reply to this, sorry

Edited by mygifts1306

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I know how much of a struggle it is to get the help and assistance you need.I went to my GP about concerns I had about my son's behaviour and asked my doctor to do a referral after reading up about the different forms of autism and how they present themselves.He spoke to my son and concluded that he didn't have it because he didn't have any problems with his speech although my son spoke in a very adult manner,ironically one of the signs of aspergers.From then on it was a two year struggle to get my son diagnosed. The special needs teacher at his school said that in her opinion he didn't have aspergers/autism and the psychiatrist who was seeing my son about him having flash backs about his abusive father was also under the same impression.After involving another doctor who had direct involvement with someone with aspergers in his family, who wrote a letter to the psychiatrist things started moving. Its a hard slog and there are still things going wrong with professionals and their involvement.One thing i've constantly done through all the upset and hard times is to tell my son that I love him. You have to remain steadfast and strong no matter what.

 

Good luck!

 

pinkdoll

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jlp   

I'd forgotten about this old post!

 

Just to update, a few months later ds2 was diagnosed with a-typical autism and PDA. He spent a year in an autism unit which couldn't cope with him, then was moved last September to an EBD school which I was horrified about. To my shock however he has thrived there, now loves school and isn't sent home for the rest of the week every Monday and has made amazing academic progress - 5 sublevels in maths in one year, he has trumpet and singing lessons as part of the curriculum lessons (child who would scream at music) and is apparently very talented at swimming and trampolining :)

 

Home life can still be very difficult but his school life is transformed.

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Hi jlp

 

This is briliant - it sounded like you weren't expecting a dx of asd, did it come out of the blue? Just curious - any idea why they said a-typical rather than saying something like 'he doesn't fulfill all the criteria for a diagnosis of asd'?

 

My son appears to be strongly PDA but also asd - I personally don't think you get one without the other (unless the child's just a little %&**^£). I think if my son could've gone to an EBD unit as soon as he stopped going to school he would have done well. He liked the sound of not wearing uniform, calling the teachers by their first names, 5/6 pupils to a class. But they said he had to do online learning/home tutoring first - which both failed. The online learning made him too anxious and the home tutor made him feel 'singled out' - something he'd spent 7 years avoiding! The Home Ed EWO has said it wouldn't have been good for him because of other pupils difficult behaviour, but as you've found it can work when you/others don't expect it to.

 

I'm sure it can be difficult at home, he'll still need to let of steam and no doubt being at school still causes him some stresses. But at least he is getting an education and enjoying learning now.

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jlp   

Hi jlp

 

This is briliant - it sounded like you weren't expecting a dx of asd, did it come out of the blue? Just curious - any idea why they said a-typical rather than saying something like 'he doesn't fulfill all the criteria for a diagnosis of asd'?

 

My son appears to be strongly PDA but also asd - I personally don't think you get one without the other (unless the child's just a little %&**^£). I think if my son could've gone to an EBD unit as soon as he stopped going to school he would have done well. He liked the sound of not wearing uniform, calling the teachers by their first names, 5/6 pupils to a class. But they said he had to do online learning/home tutoring first - which both failed. The online learning made him too anxious and the home tutor made him feel 'singled out' - something he'd spent 7 years avoiding! The Home Ed EWO has said it wouldn't have been good for him because of other pupils difficult behaviour, but as you've found it can work when you/others don't expect it to.

 

I'm sure it can be difficult at home, he'll still need to let of steam and no doubt being at school still causes him some stresses. But at least he is getting an education and enjoying learning now.

 

 

Hi Manda

He wasn't given the full ASD diagnosis because the 'late onset' of the condition - we were in an unusual position because my older son was being assessed and seen regularly after his diagnosis so our consultant saw ds#2 develop from a 3 month old baby. As he was a very smiley baby / toddler with good eye contact, none of us thought he would go on to develop autism. I suspect this was because at home with another child with autism, his needs were pretty much met - if he wanted the blue plate he got the blue plate so he didn't get as frustrated. But when he started nursery he became violent and distressed. The report also says how he displayed good eye referencing - when he was being observed he made sure the consultant was watching before he did 'naughty' things like turning on the taps, pulling the stuffing out of a toy.

 

Ds#1 has straightforward AS and is pretty straightforward to deal with. He responds to typical 'ASD' management. He's really moral and honest, sometimes a little odd, - unlikely to lie, wouldn't steal, stopped speaking to a boy who made a racist comment about another child. I can explain things to him and as long as they seem fair to him he will accept it. He strugles socially though and gets upset easily when things don't go how he thinks they should. Ds#2 is a different personality altogether, he doesn't really respond to ASD strategies, can lie convincingly, has no apparent morals! His behaviour is much more of a challenge. However on the surface he is much more social, has lots of friends and can have a good two way conversation with people that isn't just based on his special interests. He still displays ASD tendancies such as when I stripped the wall paper on the stairs last week he freaked out and tried to glue it back on but if you met him briefly you probably wouldn't think AS.

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Hi Manda

He wasn't given the full ASD diagnosis because the 'late onset' of the condition - we were in an unusual position because my older son was being assessed and seen regularly after his diagnosis so our consultant saw ds#2 develop from a 3 month old baby. As he was a very smiley baby / toddler with good eye contact, none of us thought he would go on to develop autism. I suspect this was because at home with another child with autism, his needs were pretty much met - if he wanted the blue plate he got the blue plate so he didn't get as frustrated.

 

This is just like our youngest. I did suspect on many occasions but was put off by the school nurse when she said "just because you've got one child with AS doesn't mean you've got 2". I knew he had several very strong traits but it didn't all add up until a lot of things changed in his last year at primary school, and then at secondary school he just went completely to rock bottom.

 

But when he started nursery he became violent and distressed. The report also says how he displayed good eye referencing - when he was being observed he made sure the consultant was watching before he did 'naughty' things like turning on the taps, pulling the stuffing out of a toy.

 

Our youngest wasn't generally like that - he tried really hard not to be noticed or stand out. He did once get in trouble for trying to stop another child going over the Yellow Line (not allowed) in the playground :shame: ! My eldest would do naughty things because others were doing them, completely oblivious it was wrong or that a teacher was coming and everyone else had stopped doing it :wacko: - he would've ended up being expelled if I hadn't moved him to a more understanding school after only 2 terms at the first one :angry:

 

Ds#1 has straightforward AS and is pretty straightforward to deal with. He responds to typical 'ASD' management. He's really moral and honest, sometimes a little odd, - unlikely to lie, wouldn't steal, stopped speaking to a boy who made a racist comment about another child. I can explain things to him and as long as they seem fair to him he will accept it. He strugles socially though and gets upset easily when things don't go how he thinks they should. Ds#2 is a different personality altogether, he doesn't really respond to ASD strategies, can lie convincingly, has no apparent morals! His behaviour is much more of a challenge. However on the surface he is much more social, has lots of friends and can have a good two way conversation with people that isn't just based on his special interests. He still displays ASD tendancies such as when I stripped the wall paper on the stairs last week he freaked out and tried to glue it back on but if you met him briefly you probably wouldn't think AS.

 

My eldest has AS and had many problems times through school with friends, not knowing when kids were asking him to join in to make fun of him or hurt him etc. He was painfully honest - telling a teacher in front of the whole class who was responsible for some wrongdoing, yet he did eventually learn to lie, and when he did he would actually believe it! He once stole a Hot Wheels car (his obsession) from CAMHS - very embarrassing! However since going to college (a nice sixth form college) he has thrived, and has several groups of friends. The ones we have met are really nice and very individual like he is. The first time he said he was going to a party I was really worried, but they all left at 10pm and had been playing card games :lol::clap:

 

We never thought the youngest one would have MORE problems than his brother, but now he rarely leaves the house (at 15 he has NEVER EVER left the house on his own), school nearly destroyed him, and he has lost all his friends. But he has one thing his brother doesn't - anxiety, I think now that's mainly due to his senses being too sensitive. This is what has got the better of him, and at times has caused violent behaviour (despite his best efforts to control himself so as not to stand out). He has never understood why people should have authority over him just because they are older. And if we said "stop doing that or we'll take that toy away" he would just give us the toy (presumably so he could carry on doing it without punishment?!)

 

It's amazing how different they can be, and I am now having some sympathy for the difficulties of diagnosis!

Edited by Mandapanda

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